Making the Changes that Matter LCA Survivorship Forum 1 st May 2014.

Making the Changes that Matter

LCA Survivorship Forum1st May 2014

Welcome and Overview of the afternoon

Survivorship Pathway update:Progress and Plans

Nicola GloverSurvivorship Project Manager

The London Cancer Alliance West and South

LCA Survivorship Group: The story so far (2013/4)

• Group set up, including three communities of practice• Engagement

– Provider level– Clinical Fora– With other pathways– Pan-London including with commissioners

• HNA tool• Treatment summary agreement• Metrics

The London Cancer Alliance West and South

The story so far (continued)

• Survivorship service mapping• Lymphoedema service mapping• Lymphoedema specialist education mapping• Complementary therapies guidelines developed• Consequence of cancer position statement• Motivational interviewing courses• Skin (urology) HNA screening tool• Fertility pathway

The London Cancer Alliance West and South

What were the metrics? METRICS

1 % of patients that receive HNA at diagnosis Evidence:- Evidence within the patient records of HNA having been offered- Evidence of actions completed in response to the HNAPerformance Measurement:- Baseline audit when HNA tool launched- Year 1 Q3: Baseline of current practise- Year1 Q4 Shadow metrics submitted TARGET 10%- Year 2 Q1-2: 25%- Year 2 Q3-4: 50%- Year 3: to be set following review of achievement year 2 Q3

2 % of patients who have an end of treatment summary Evidence/quality measures:- Evidence of the necessary paperwork having been completedAssurance/Performance Measurement:- Yr 2 Q1: baseline of current practice- Yr 2 Q2: shadow data submitted. TARGET 10%- Yr 2 Q3: 20%- Yr 2 Q4: 40%- Yr 3 Q1; to be set following review of achievement year 2, Q4

3 % of patients who are offered an end of treatment consultationEvidence:- Evidence in the patient record of an end of treatment HNA having been offered- Evidence of information on smoking cessation, healthy eating and exercise having been

discussed and given as part of the resulting care planPerformance Measurement:- Yr 2 Q1: Baseline audit of health promotion information currently being given- Yr 2 Q2: shadow data submitted. TARGET 10%- Yr 2 Q3: 20%- Yr 3 Q1-2: 40%- Yr 3 Q3-4; to be set following review of achievement year 3, Q1

The London Cancer Alliance West and South

And what will they be?(from NHSE London Commissioning Strategy)

Intervention 2 years 5 years

Recovery package:HNA & Care planTreatment SummaryH&WB events

60% completed75% completed

100% completed100% completed100% completed

Stratified follow up Fully implemented in Breast, Colorectal, Lung and Prostate

All pathways

Physical activity Include intervention in H&WB event Offered to all as appropriate

Work supportFinancial supportVR

Include in HNA & Care plan

Offered to all as appropriate

Consequences of treatment:LymphoedemaPelvic radiation diseaseSexual function

Evidence of referral pathways from MDTEvidence of referral pathways from MDTEvidence of referral pathways from MDT

Full services in place

Cancer as a LTC Develop links with LTC Work with Integrated Care Champion sites

LW&BC fully integrated into the management of LTC agenda

The London Cancer Alliance West and South

LCA Survivorship Group: Next steps (2014/5)

• Continue aim of reducing inequality and improving patient experience

• Refine metrics inline with new commissioning intensions• On-going work on recovery package

– Solutions to (full) HNA implementation– Support package for implementation of TS– Agreed approach to roll-out of HWBE

• Develop pathways for lymphoedema management• Audit complementary therapy services• Work towards LCA-wide best information and referral

pathways for exercise, diet and return to work/education• Research and audit position statement and strategy

The London Cancer Alliance West and South

Clinical Board

ChairNatalie Doyle

Pathway GroupSee ToR

Clinical Fora

The pathway group is responsible for driving the work of the pathway. Members must represent:

their work groupTheir profession

Their employing organisation

The work streams are responsible for delivering theirwork programme to them. The membership

is based on the perceived strengths of both the individuals and of the

stream in its entirety. Members can be co-opted from outside the Survivorship Pathway Group. See page 2 for

membership

The clinical fora enables the outputs from the pathway group in its entirety to be shared more widely.

It provides the LCA clinical community opportunity to constructively challenge the recommendations of

the Group. Engagement with the forum is critical to ensuring recommendations and outputs

are integrated into practice

The clinical board are responsible for the clinical leadership of the LCA. They are

answerable to the members board

The Chair is responsible for the leadership and vision of the Survivorship pathway and is

answerable to the clinical board. She must deliver against the model of care

The set up of the pathway is determined by herto ensure delivery and output

is optimal

Communities of Practice• Rehabilitation• Lymphoedema

• Complementary Therapies

Work-streams• HNA implementation• Treatment summary

implementation• Health and Well-

being events• Metrics• Research• PROMs

Consequences of Cancer Treatment affiliated groups

• Pain• Fertility

• Sexual Dysfunction• Menopausal symptoms• Pelvic radiation disease

• Fatigue• Bone health

The Communities of Practice are constituted from acknowledged experts in their field from across the

LCA. They are responsible for the delivery of specific work items from the survivorship work plan in addition to their own work priorities. They have their own terms of reference but are accountable

to the survivorship group. Some project management support is available to them

The consequences of cancer affiliated groups are tasked with leading the investigation into current availability of services

for management of consequences of cancer treatment. These groups are highly like to be constituted from several

pathway groups and project management support should not be assumed. See page 2 for survivorship membership

The London Cancer Alliance West and South

HNA roll-out:Maureen Dowling

Jo JeffordMichelle Kenyon

Cathy WilsonNicola BeechBen Hartley

Treatment summary roll-out

Julie BakerKate Shaw

Suzie StanwayNic Glover

Health and Well-being Events

Nic GloverLorraine Barton

Teresa YoungDonal Gallagher

Sonia PertAnn Muls

MetricsJulie Baker

Claire TaylorTheresa WisemanMaureen Dowling

ResearchTheresa Wiseman

Claire Taylor

PROMsTeresa YoungClaire Taylor

Michele KenyonBonnie GreenJanine Mansi

Work-stream Membership

Consequences of Cancer MembershipPain

Suzanne Chapman

Fertility/ MenopausalSymptoms

Will TehAlex Taylor

Nick WatkinsIsabel White

Louise SoamesMichelle BullNicola Glover

Sexual Dysfunction

Isabel White

Pelvic Radiation Disease

Ann Muls

Fatigue Bone Health

Janine Mansi

The London Cancer Alliance West and South

Questions?

Challenges in Changing Services

Sandra JacksonHead and Neck Clinical Nurse SpecialistMount Vernon Cancer Centre

The London Cancer Alliance West and South

Focus

• Moving on from Head and neck cancer workshop• Collaborative Aftercare Protocol

• Local challenges• Global challenges

• What would help?

The London Cancer Alliance West and South

Early days

We had• No research proposal• No project plan• No business case• No budget!But we also had • Patients with needs • A dedicated head and neck team

The London Cancer Alliance West and South

What were the needs and drivers?

• Increase in calls from patients at around 3 months post treatment • Treatment consequences concerns and anxieties• Some improvements in physical well being leading to reduction in OPA• “Safety net removed”

• NCSI – Changing follow up practice

The London Cancer Alliance West and South

What did we do?

• “Moving on from head and neck Cancer” workshop commenced in 2005

Important• Multidisciplinary input• Relevant to patient and carers

The London Cancer Alliance West and South

Content

• Information• Skills• Normalising peer support• Reflection• Guidance on symptom concerns and alerts• Soft moist textured diet or supplement lunch available

The London Cancer Alliance West and South

Local challenges

• Patient recruitment & commitment

• Unknown expectations

• Creating space in job plans

• Support for evaluation

The London Cancer Alliance West and South

What did we do?

• Developed a Collaborative Aftercare Protocol• Patients 2 years beyond treatment who fulfil a defined disease and patient criteria• Alternating CNS led telephone consultations with clinic consultation

The London Cancer Alliance West and South

Local Challenges

• Clinicians and AHP’s not involved in development of protocol were less engaged with new practice.• Managing differing levels of enthusiasm• Job plan concerns• CNS cover for clinic• Increased workload in clinic• Securing ongoing funding

The London Cancer Alliance West and South

Survivorship is flourishing!

The London Cancer Alliance West and South

But The Business Case!

The London Cancer Alliance West and South

Barriers to permanent adoption of change

• No national tariff

• No national HRG codes

• Existing tariffs do not reflect level of expertise required to provide service

The London Cancer Alliance West and South

Difficult Conversations

Costs

Income Generation/Income Loss

Quality care

The London Cancer Alliance West and South

What would help?

• National document outlining consequences of not providing on-going strategies

• Pass/ fail outcomes which would effect commissioning of services

• Inform negotiations between providers and commissioners

• Redirection of money saved on avoidable costs

The London Cancer Alliance West and South

If I knew then what I know now

• Macmillan – Making Change happen study day

• Tim Anstiss – Health Coaching and Motivational interviewing

• Involvement from the start with the Support Oncology Research Team in The Lynda Jackson Macmillan Centre

The London Cancer Alliance West and South

Something to share

I just want to say a thank you for the Moving on from Head and Neck Cancer workshop. I was very sceptical about

attending, not knowing if there would be anything relevant to me. I am so glad I decided to go.

Every speaker gave me valuable information and some cases exercises which will benefit me for many months to come and

possibly for life.

I thought over the months of treatment I had learned everything I need to about recovering from surgery and

therapy but this workshop gave me so much more.I can’t recommend this workshop highly enough to future

patients.

The London Cancer Alliance West and South

Thank you

Appreciative Inquiry

Dr Tim Anstiss M.B, M.Ed, D.Occ.Med, M.F.S.E.M

Visiting Research FellowHuman Development and Health Academic UnitFaculty of Medicine, University of Southampton

Close

Thank youSee you next time!